Now to the story of a rare genetic condition that is often fatal in the extraordinary efforts

by parents and doctors to extend the lives of affected children through intensive interventions.

Alongside those advances come some difficult ethical questions.

Our Stephanie Sy has more.

It's an agonizing diagnosis for parents and families. Trisomy 18, also known sometimes

as Edward's syndrome, is often fatal within weeks after a baby is born. But advances in medicine

and research have extended survival in some cases, raising questions about how to approach

this rare chromosomal condition in and outside the womb.

Dr. Sherry Fink recently chronicled in the New York Times what happened to a young boy named Noah

through the enormous efforts of his mother, Dr. Jacqueline V. Dosh, an intense treatment.

Sherry Fink is also the Pulitzer Prize-winning author of

Five Days, which is about patient deaths at a New Orleans hospital after Hurricane Katrina.

And she joins me now. Dr. Fink, thank you so much. This is a tremendous piece of reporting you did.

And you've been following some of these cases for years. Tell me,

what has changed the outlook for kids born with this disorder?

Thank you. I think it's actually been the families. For many years, this was considered

a diagnosis that was too lethal to treat. When I went to medical school, that's what we learned.

And these families found each other. They formed support groups when a child, they would have a

child, a child might survive against the odds. And with the advent of the internet and social media,

parents who had kids who did survive, found each other and

started to, in some cases, request the same kinds of treatments that other children would get

who didn't have the diagnosis.

...